Skip to main content

Update on how my CF appt went..

I had my CF appointment today!

As you all know my goal was 105 lbs. (up from 101) and I wanted lung function to go up 3% (up to 60%).

My actual outcomes were 107 lbs and 58%. I gained 6 lbs. and 1 percent lung function over the last two months... Dr. B could see the disappointment in my face and replied "Its in the right direction, this is good. Very good". AND he is right. Its hard to gain lung function, but sooo easy to lose it. If I gained even 1% per every 2 months.. I could get 6% in a year and be at my (first set) goal of 70% in 2 yrs.  (chart of progress of weight and lung function Click here!)

Dr. B is a huge advocate for running and exercise...his practice even has the word EXERCISE in the title...LOL. So he was quite happy I took his advice on jogging/walking. He asked me how I liked it and I realized that I really do enjoy it. I feel like I can breathe better the days I jog, etc. At first it was hard...but seriously advice to the CFers or anyone really...stick with it. It is worth it!

And in case you read my last blog and are curious about my ?s I asked:

-I'm seeing a surgeon to look at my mediport (there is a medication they might be able to put through it, so I don't have to have surgery to replace it and he will also change/give me the new type of "mini" g-tube )(Yay!!!!!)
-My Vitamin D went up from 14 to 25... So another 3 wk round of high does Vit. D.. He wants it to at least 60ish + take high amounts of Vit D 3x a week.
-The Amazing Race, he said he will talk about it on August 11th( my next clinic) with me (after my first 5K). He wants to see how I do with the 5K. He goes " if I don't see any photos of you collapsed on with an IV drip after the race..." hahaha.  No worries, I will drink plenty of Gatorade! :-)

ALSO I need to have people take pics of me before, during and after the race on August 4th! Dr. B wants to include a blurb about my training and the 5K in his newsletter.

Funny Story: My old Clinic didn't send much of my past information to him. I decided last month to call St. Francis Hospital directly (speak with records and have the hosptial send it all). St. Francis would have everything, surgeries, diagnosis, hospital stays, etc. Dr. B said it arrived Monday and he put on his Nurse Practioners desk...She was like "OMG seriously??" Apparently, Dr B and Lisa will busy reading about my Case history for the next few months....LOL  


Labels:

Comments

Post a Comment

Popular posts from this blog

Clinical Trial, lung function test, and Crohn's diease

Clinical Trial, Clinic Today:   Clinical Trial 9am: Today, I went back to Dr. B's office for the clinical trial evaluation and start of trial. My last evaluation was a mess and I was not too happy with it ( Read about the first trial evaluation mess here! ) Luckily, we doubled today with my CF Clinic. It was a long day 9am-2pm in the office. BUT, good news is I'M ON THE TRIAL! It's not a new drug. I'm just doing the two meds like I always have (unless I get the placebo). I love being a part of clinical trials! The thought of helping drugs be approved that can help our health or even get approved by insurance easier! In the past I did a Clinical Trial for enzymes (that was a horrible clinical trial). I had to collect my stool in buckets and mail it to the lab...EW. But, it was to help us digest food better. AND now I'm on Zenpep, which is a fairly new enzyme and it does wonders for me! I did clinical trials also for Pulmozyme and Tobi too! So excited to get involv...
Post a Comment
Read more

A Simple Hug

I'm a hugging type person. In fact, I have a couple friends that aren't big on hugs or any kind of public displays of affection. However, they usually bring the bubble barrier (as I call it) down to hug me good bye. I'm also super extroverted and LOVE to hang out with friends.... Therefore, not being able to see my friends (with CF) in person drive me nuts. A lot of people (in society) don't realize that people with CF cannot be around each other. This is due to the bacteria we colonize in our lungs. It doesn't affect non-CF individuals. But, as we come in close proximity with other people with CF those bugs spread and continue to damage our lungs faster. We fight off the bacteria with antibiotics, but when I was younger we didn't have many options for antibiotics (especially nebulized). This meant we could not eradicate the bacteria and were stuck with it in our lungs for the rest of our life. The more bacteria we culture, the faster our lungs are damaged, t...
2 comments
Read more

How theatre helped me more than you can know!

Theatre and the balance of my life Every person with Cystic Fibrosis has to figure out to balance the medical with the social. For years I had no clue. Currently, I'm in a show Hairspray, its really fun and a show I've always wanted to do. I'm being smart, no matter the time I get home I still do my meds, I still find time to do my jogging/exercise everyday and I eat extra/do extra stomach feeding to make up for calories burned. I've been sharing about my CF with cast members, when I need to and even the director knows. I watch my energy/blood sugar. AND even while doing the show I'm at my highest weight in 10 years and on Thurs at clinic (CF appt) I will find out if my lung function has gone up (hoping for 60%). So no worries..  I learned from my mistakes though. In the past I was stupid. When I was cast in   Urinetown, at the University of Illinois, I kept pushing too much at rehearsal and then even went out with cast members some...
2 comments
Read more